Partner Spotlight: The National Organization for Rare Disorders
Published on Jul 6, 2020. Updated on Sep 15, 2020.
The National Organization for Rare Disorders (NORD®) has partnered with Osmosis on many exciting projects, but just what is NORD all about? Today we’ll shine a spotlight on this essential organization.
Over 25 million people in the United States live with a rare disease. A disease is considered “rare” if less than 200,000 people in the country are affected by the condition. NORD’s motto is, “Alone we are rare. Together we are strong” and they are dedicated to supporting rare disease patients, their families, and the research behind treatments and cures.
What is NORD?
The National Organization for Rare Disorders (NORD) is a patient advocacy group that pursues the identification and treatment of rare diseases. They partner with more than 300 patient organizations to support educational and research projects as well as rare disorder patients and their families.
NORD has been an integral part of passing legislation supporting patients and funding research projects since it was found in 1983. NORD’s mission of increasing awareness of the struggles faced by rare disease patients fuels its action. They strive to usher in a culture of innovation around the study, treatment, and accommodation of patients and their families to health care and our society.
Projects and programs that support the community
Osmosis has had the privilege of collaborating with NORD on a number of videos on rare diseases, which have been very positively received by health professionals and the people in their care. For people living with rare diseases, the experience of watching an Osmosis video on their specific condition can be a very special moment. When you’re living with a rare disease, it’s often difficult to find resources to help you understand what you’re experiencing—let alone materials that are easy to comprehend—as accessible research unfortunately tends to focus on topics that are relevant to the widest possible audience.
We’re very happy to have had NORD’s support in co-developing content for people living with rare disorders to help them make sense of their conditions. Explore a selection of the videos we’ve created together in the Playlist linked via the image below!
NORD’s COVID-19 Resources
NORD has taken a proactive approach to solving problems created by the coronavirus pandemic. With expanded resources, patient advocacy, and innovative partnering, they are countering COVID-19 in a holistic way.
In NORD’s COVID-19 Resource Center, the organization has created content including videos, articles, webinars, and advocacy tools that will help nonprofits as well as community members. Intended to support patients, caregivers, researchers and advocates, the Resource Center is an excellent place to start for anyone who has been affected by the virus.
Through their Rare Action Network, NORD has also been bringing community members together in virtual discussion groups. Run by state, patients and caregivers can connect with one another, share their stories, and ask questions. Visit the RAN page for more information about ongoing discussion groups.
The latest episode of their COVID-19 webinar series, Crisis Communications: COVID-19 and the Future, took place on June 25. The archived version of it and previous webinars and videos can be viewed on-demand on the Resource Center page.
NORD has also launched the Rapid Response Leadership Series, which offers resources and live webinars custom-made for nonprofit organizations. This series offers essential insight for nonprofit leaders as we embark on a new fundraising landscape brought about by COVID. The videos and webinars will focus on education and training, bringing to bear the expertise of NORD and their hundreds of partner organizations.
The organization also offers seed grants of up to $15,000 for member organizations. These grants will provide extra support to carry organizations through this tough time.
“Together we are strong.”
The National Organization for Rare Disorders has been hard at work for over 37 years, and they have kicked into overdrive in order to meet this current public health crisis. Connect with NORD on their website, or on Facebook, Twitter, and Instagram. There are many ways to stand in solidarity with the National Organization for Rare Disorders!